Epilepsy Talk
Women in severe pain are often dismissed… | November 5, 2024
Call it ghosting, neglect, prejudice, disbelief, whatever you choose.
But the fact is — women are dying.
Read the story of Diana Falzone and see if you can relate…
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Phylis Feiner Johnson
I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.
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Epilepsy Talk 
This resonated with the way I am treated. I spent two days in the Emergency Department unnecessarily because no one believed me when I said that I couldn’t have an MRI because of the VNS. I was bullied by a nurse, left to beg for food and a nurse to take me to the bathroom. When I told them my pain was an 8/10, I was told that I couldn’t be because I am smiling. Also, I came in with a numb leg, so how could I feel pain? The nerve pain in my neck and back led to this, genius!
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Comment by Mary Ellen Gambon — November 5, 2024 @ 10:25 AM
Oh Mary Ellen, which is worse: the pain, indignity or disrespect?
Not even being able to go to the bathroom or eat sounds like prison. Not a caregiver’s environment.
And the pain? How could it be ignored?(I would have thrown a few curse words in there to make my point.)
Worst of all, you left the hospital without the problem being resolved.
Oh goody. You didn’t have a stroke. But what did you have?
More pain.
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Comment by Phylis Feiner Johnson — November 5, 2024 @ 10:50 AM
I hope I remember to send the titles of some books about this later…written by women with epilepsy.
You probably know about them, but it would be good to share.
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Comment by Flower Roberts — November 7, 2024 @ 1:09 PM
A Great Place for a Seizure – a novel by Terry Tracy is outstanding.
Mischa Dunn’s family flees Chile in the wake of the 1973 coup d’etat that installs a military dictatorship. She settles comfortably in her newly adopted country, the United States, until one day, an unexplained seizure in a library signals the beginning of her life with epilepsy.
With an engaging balance of humor, insight, and sensitivity, Mischa draws the reader into a vivid tale that travels across three continents over thirty years.
As for the writer, Terry Tracy has worked as a human rights activist, journalist, and diplomat. She has epilepsy and in 2007 wrote the charter for an association of disabled employees at the U.S. State Department.
I read it twice. it was that compelling!
https://wordgathering.syr.edu/past_issues/issue21/reviews/tracy.html
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Comment by Phylis Feiner Johnson — November 7, 2024 @ 1:37 PM
And more…
Epilepsy Brought Alive By Three Amazing Talents
https://epilepsytalk.com/2011/06/30/epilepsy-brought-alive-by-three-amazing-talents/
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Comment by Phylis Feiner Johnson — November 7, 2024 @ 1:40 PM